portrait.

"Writers scribbling in the midst of grief have noted the ways in which writing about the experience from the inside creates something new, namely, a safe or safe-ish place to rest.  A net, a landing point, a dock from which to view the turbulent and troubled water without having to wade in it every moment of every day.  In a word-relief..."

--Emily Rapp, The Still Point of the Turning World.

 

 

I started re-reading Emily Rapp's book this week.  It's about the life and death of her son, Ronan, who was diagnosed and eventually died from Tay-Sachs disease which is incredibly similar to Batten's.  I read these words and I think to myself that they could be mine.  The depth at which she explores and explains her journey through diagnosis and her own grief is inspiring. 

 

I realized today that for quite some time I have stopped exploring my own grief.  I pushed the pause button at some point-when we got a diagnosis maybe, and that has been good.  I think I began to understand at some point that if I opened the grief gates once again, the waters would surely come rushing over me. 

 

But today, I feel like that's ok.  Maybe I am due for a sad day.  I have enjoyed reading about Ronan because it has reminded me of all that is still true about Mabel.  I find that throughout my day I am so engrossed in her care and in simply being with her that I forget she is dying.  I talk about Batten disease often.  I even speak words about death often.  But to be honest, Mabel is just Mabel to me now.  She is sick and she is different.  But otherwise I forget that there is anything truly unique happening in our lives. 

This could be a very good and a very bad thing.

---

"Grief, I realized, is watery and trembling and always exists beneath the surface of real life; just a gentle touch and it's spilling everywhere.  The seams are easy, too easy, to split."

Last night I felt myself getting a little sad.  Things were a little heavy and the truth is I just needed a good, long cry.  I talked to Rache and allowed myself a good half hour to just be internal. 

 

I was so glad that she had planned a girl's day today.  She said we were getting pedicures. 

And then she got here and asked if we could have lunch with her boyfriend, Matt, and his mom, Connie.  Connie is an artist and she draws the most remarkable photos I've ever seen.  She sketched the most vivid and detailed portrait of Harper that I just adored and when she did, I expressed how greatly I would love to have one of Mabel.  I knew how special something like that would be to have. 

 

I had no idea that there were no pedicures planned for today.  We met for lunch and the waiter brought out a wrapped gift just for me.  I knew immediately what it must be but until that moment I had no idea.  I handed Mabel to Rache and opened the gift. 

And cried.

A good, real, true cry.

To see the detail of Mabel's face so articulated right in front of me was completely overwhelming. I reached out and touched the place where her perfect little curls lay and couldn't believe my eyes.  For days, all unknown to me, Rache, Matt and Connie have been talking about the details of my girl.

 

These people know her.  I mean, they really truly know her.

And as her mom, I feel like I've done my job. 

 

They know the shade of her hair.  The glimmer in her eyes.  The poof of her hair.  The shape of her teeth.  The crease of her neck.  The size of her nostrils.  The angle of her brow. 

And to hear them talk about the meticulous work that was put in to making this portrait perfect seriously humbled me. 

Honestly, I spend my days memorizing her.  Every detail is etched so deeply into my mind that I feel as if I could never possibly forget her.  But it's always a worry.  It's always a terrifying possibility. 

Today Rache expressed that she feels the same but talked about how doing this project with Connie helped her realize that she knows her better than she thinks she does.  It helps me feel like we all have worked so hard to just know her in the very best ways that we can. 

 

She is here. 

Alive, well, breathing, smiling, happy. 

And we know her.

 

She has the deepest dimple, the giddiest grin.  Her brows are thick and full and arch just so.  One ear lays against her head and the other pokes out from her skin; one is bent and one is straight.  Her fingers curl and her eyes gleam. 

 

And we know her. 

Today reassured me that we won't forget. 

And that was needed. 

Today's gift was emotional.

It is so beautiful and sentimental and like nothing I could really ever explain.  All I know is that to see Mabel every day and to then see the details of her that I love so desperately on white canvas in front of me is remarkable.  I fall more in love with her all the time but today I looked at her in all new ways and for that alone, I'm grateful.

 

I can't fully express my gratitude to Connie but I hope that from my mother's heart to hers, she knows that I am thankful.  This is something I will truly treasure forever.